One MSer's guide to life, love, happiness and of course wearing fabulous shoes!

Thursday, June 28, 2007

In most areas of my life I consider myself an overachiever. I am also a bit of a perfectionist. I expect a lot from myself, sometimes more than is humanly possible; hence, my husband often teases me about trying to be "SuperWoman".

I am disappointed in myself for not healing faster, for still not being able to see straight...heck, I am even disappointed in myself for having MS! I am being silly, I know, but it is hard for an overachiever to swallow that she is approaching TEN weeks of "binocular diplopia" and showing little signs of improving vision. Why is my brain not healing faster?!?!?It can be very discouraging.

I feel as if I should be moving forward and getting on with life, getting back to work, back to driving, looking for a house, going out with friends, etc, etc. Yet it is very hard to move forward and close this chapter when it hasn't been resolved. Tomorrow is my 8 week follow up at Shepherd Center, where hopefully they will tell me:A) Yes, you are taking a bit longer to get your vision back, but still within normal parameters for this disease. Just hang in there and be patient a bit longer, ORB) Hmmmm, you should probably be able to see by now, perhaps we need to run some tests and see what's going on in that noggin of yours, ORC) No, you should definitely be able to see by now. Episodes ("detours") don't last this long. We could be looking at more permanent damage and disability here.Obviously I prefer choice A). B) would be manageable. C) less than desirable, but then at least I would know what I was up against and could face it head on.

When the future of your eyesight is still in limbo, it is hard to move on and think about normal, fun things. But I hope to have answers soon and will keep fighting the good fight ;-)

We just returned on Tuesday from a destination wedding weekend for our friends Paul and Karen and we leave again tomorrow for Chris' uncle Rob's wedding. Lots of June weddings! But it has been nice to be able to attend them and be somewhat social (even if I have to constantly wink at people to see who I am talking to...I refuse to wear my pirate patch at a wedding - it just doesn't go with formalwear!)

So for anyone out there reading this - send me good luck "Choice A)" thoughts tomorrow 9am.Will keep you posted and write more soon.XOXO

Tuesday, June 19, 2007

I am feeling a bit dejected today.I think I am just tired. I recently went up to my full dose of Betaseron and it has me feeling less than stellar. My left foot has been numb on and off all day and I keep tripping over it. And the icing on the cake: My vision still isn't back to normal after 8 weeks.

Dr. Thrower told me the typical lifespan of an MS "episode" (or, "detour" as one of my bestest friends calls it) is 4-6 weeks. So naturally, being the over-acheiver that I am I assumed I would have this thing licked in 4 weeks easy.And here we are having just passed the 8 week mark with 9 fast approaching and I have to wonder WHY am I not healing faster??? It must be because my brain is SO incredibly large that it takes at least double the normal time to heal...right? ;-)

I met with an Occupational Therapist at Shepherd Center on Monday who told me that while there isn't anything I can do to heal my brain (except be patient) there are exercises I can do to strengthen my eye muscles, hopefully giving me more than 2 hours per day of decent vision with one eye patched. It's sort of like Eye Aerobics!

At any rate my follow up with Dr. T is Friday the 29th at which time if I still can't see straight then I am hoping he will just sprinkle me with his MS Fairy Dust which he reserves for only his most favorite patients and I will be all better.Wouldn't that be nice. :-)

Thursday, June 14, 2007

For those of you that may not know, I am 5'11"with a short torso.Yes, it's true. I have Very long legs.Also, I have always been someone who walks Extremely fast.

Partly this is because my stride is longer than most. Or as my friend Angela says, she has to take 3 steps to every 1 of mine just to keep up. But it is also because I enjoy being a person on the move. I am impatient, I like being busy,I like to go-Go-GO.I am not someone who strolls or meanders.I walk fast. Or, I used to anyway.

It is frustrating to try to walk when you can't feel the ground under you because both your legs are numb, and your balance is off so you look like a drunk (and not getting ANY of the benefits of actually being drunk!!) and you reach for every piece of furniture you pass just in case you lose your footing which could happen at any given moment.

Frankly, on days like that just getting from the couch to the bathroom is utterly exhausting.

Chris and I attended the wedding of our friends Zach & Deborah this past weekend. It was a lovely weekend with some of our dearest friends. And despite the pleas to my body, the night of the rehearsal dinner, my legs went numb...and continued to be numb off and on all weekend long. And while it is was embarrassing at times and I would have preferred to have feeling in my legs, I found that when you are with real friends, it doesn't really matter. The "415 girls" took turns helping me walk to the ladies room, the "415 boys" helped me up/down those darn marble stairs and brought me ice water when my fever was spiking and after a while I forgot that I was dealing with all this medical crapola and just enjoyed being with our friends.

After the wedding, I spent a few days with Jennifer (my best friend from childhood) and her family who live in Cherry Hill, NJ. Jennifer is an RN so she isn't at all squeamish about medical ailments and it would seem her daughter Lola, who is almost 3, is following in her footsteps. Upon arriving at their house Sunday evening I was way past due on my injection so I quickly began getting out my equipment and preparing my syringe. Without missing a beat, Lola sat next to me and asked, "What are you doing Caroline?"

"Well I have to give myself a shot."

"Why?"

"Well because I am sick and this shot will help make me better."

"Can I help?"

Not wanting to allow a 3 year old to play with needles I gave her the all-important task of swabbing the vial with alcohol and throwing the non-biohazard trash away. She was thrilled.

Then taking advantage of my RN friend I asked Jenn to give me my shot, which she gladly did. You can always tell the RNs from the rookies because RNs shots don't hurt. Barely felt it.

And Lola who has sat and watched the whole thing without being the least bit squeamish (Future RN, I just know it) looks up and asks, "All better, Caroline?"And when an adorable 3 year old smiles up at you after wholeheartedly helping prepare your injection...How can you not feel all better?

So after a cancelled and then rescheduled flight home to ATL, I found myself for the first time since my diagnosis...in a large airport, alone, tired and legs a little wobbly with no friendly or husbandly arm to hold onto for support. I was nervous, yes, but also determined to make it to baggage claim by myself. I began my slow walk down the concourse and discovered something: walking at tortoise speed wasn't going to kill me. It didn't even hurt. In fact- it gave me the opportunity to people watch (which I love), to stroll, meander even...and I found myself smiling. I am alone in the ATL airport, my legs wobbly, my vision absolutely horrible and still seeing double-everything...and I am smiling because at 27 I finally realize- what's the big rush? Why did I have to walk so fast my whole life? What was I in such a big hurry to get to?

A friend once gave me a book called "The Precious Present" and if you haven't read it, you should. I re-read it at least once a year (its very short) to remind myself its okay to live in the Now and enjoy the present. Well nothing has hammered that point home like MS has. I am so thrilled for every day I wake up and feel good. I don't mind that I have to walk a little slower or cover one eye to be able to read something. I am grateful for the health that I have and for the good days.I am looking forward to more opportunities in my life to stop and smell the roses...

Tuesday, June 5, 2007

As I am learning to live with "the MonSter", I am discovering that there are Good Days and there are Bad Days.

Today has been Good.

It began with waking up and for the first time in 3 days my legs were NOT numb! Yippee!!!!So walking has been so much easier today and I am grateful for that.My vision is more or less the same, but I have started driving short distances, with one eye patched, with permission from my Dr. of course. It certainly isn't easy, lacking depth perception and all, but I am able to do short distances during the day and am starting to feel slightly human again.I cannot tell you how awesome it is to be able to run to Eckerds or Publix or Starbucks if I really want to (don't worry they are all within a 1/2 mile radius from my house so you are most likely safe! hahaha)

Secondly, at 10am this morning my next shipment of Betaseron arrived. The nice FedEx man brought it to my door, in a styrofoam cooler with cold packs. But wait! That isn't the best part!After several days on the phone with Aetna...after numerous phone calls that ended with the words "$1600 per month" or "your plan doesn't cover that" Chris and I did not back down. We kept calling and asking what other options there were and we kept at it...and today, my 90-day supply is safely in my cabinet for the low, low cost of $40!!!!! I feel as if we have won a huge victory over the big, bad insurance company, which is silly, really, since they SHOULD be paying for my medicine anyway! Nevertheless, the battle has been won and we will not have to organize a "Help Caroline Pay For Her Betaseron Bake Sale".

Monday, June 4, 2007

This originally began as a series of emails to my Family & Friends updating them during the onset and then diagnosis of my disease (Multiple Sclerosis). I decided rather than continue to overflow their Inboxes I would move my "updates" to blog format. And so here we are!I have included my original 4 emails (below)...you know, just in case someone stumbles across my blog and needs the exciting backstory of it all! But from here on out its all brand new...so read, share and enjoy!

Since so many people have asked me, "So what exactly is MS? Is it like, 'Jerry's Kids'? Or is it what Michael J. Fox has?" I have decided it would be a good opportunity to explain what this bizarre disease actually is (since I had no clue 4 weeks ago either!)

Multiple Sclerosis is still a big mystery and no one yet knows what exactly causes it, and of course that means there is no cure. It is often referred to as a "chronic, inflammatory, degenerative disease of the central nervous system". It is classified as an autoimmune disorder; however, there is also speculation that MS is triggered by an unidentified virus.

Let's break it down (with a little help from the great Lorna Moorhead):The latest theory on MS is this: Your white cells (the warriors of your immune system) suddenly decide to stage a coup. They begin attacking the myelin, which is like the big wall protecting the kingdom (aka Your Brain!) Well, these rogue knights (white cells) make their way into the kingdom and begin to wreak havoc on the kingdom's workers (your nerves) and things go berserk.

Well the problem with all this is that the kingdom needs these workers to keep the kingdom running. When these workers (nerves) are injured or captured, the messages get distorted or completely changed. So when the King (brain) sends out a message about regulating food supplies (aka the stomach is full), the message gets confused. Instead, the worker thinks he's supposed to lay a fire in the kingdom's main hall to regulate heat supply and you suddenly feel as if your legs are on fire from the inside out.

For most people with my type of MS, which is called relapsing-remitting, the battle will end and all will be well in the land again. This period of peace and tranquility is called remission; however, when the argument picks up again and the knights again lay siege to the kingdom, you will experience a relapse (also known as an episode or exacerbation).

For all types of MS, the damage and ruin left behind by the rogue army in the brain and spinal cord is in the form of "many scars, or lesions" = hence the names Multiple Sclerosis. MS can cause a variety of symptoms, including changes in sensation (numbness and tingling are common), visual problems (double vision, anyone?), muscle weakness, depression, difficulties with coordination and speech, severe fatigue, cognitive impairment, problems with balance, overheating, and pain. One of the most frustrating things to doctors studying this disease is that it affects each patient so differently, depending on which signals are interrupted.

While I hope my explanation of MS was at least slightly entertaining, I also hope it was informative. I hope that you will all help me raise awareness about it. It is a very mysterious and unpredictable disease that changes its victims lives forever, and while we now have wonderful treatment drugs available, there still is no cure. I look forward to becoming an MS expert in my own way and raising awareness, along with $$$ towards research. But more on that later...for now, thanks for reading and thanks for being a part of my wonderful support system. Check back soon for more updates and info! XOXO

Friday, June 1, 2007

Dearest Family & Friends,It has been 5 weeks since this wacky journey began and though my vision is still not 100% it (usually) gets better every day. Some days are better than others (Isn't that a U2 song??) but I do feel that I am making progress. It is still rather hard to read as the words start to mush all together after about an hour of reading a book or emails. Nevertheless I am grateful to have the ability to read even for a little while!

I started my Betaseron injections (aka Wonder-Drug) just over a week ago and this morning I did the first "upping" of the dosage. Apparently it is a pretty strong drug (the stronger the better, gotta heal those brain lesions!!) so Dr. Thrower put me on a schedule that weans me on to a full dose. I am doing great with the actual injections, though I do feel a bit like a human pincushion! hahaha. The only downside to the Wonder-Drug is that it takes a while for my body to get used to it and causes me to feel flu-like and run fevers, which in turn makes the double vision worse. SO annoying. Sometimes it feels like two steps forward, one step back...but I AM moving forward. :-)

I have to share this one last thing: many of you know I am obsessed and fascinated with cards. I love picking out cards for people's birthdays, anniversaries, or just because. I think receiving something in one's mailbox other than junkmail and bills is such a wonderful surprise these days. And I would be lying if I said I didn't love receiving cards, too.Well, let me tell you I have Never had so many cards in all my life. I taped them up all over my kitchen cabinets and I am actually starting to run out of room!!! Whenever I feel a little bit sad or dejected about this whole thing, I go stand in my kitchen and re-read all my amazing cards and I am instantly reminded that I am not alone in this journey and that there is still so much life to be lived and so many laughs to share with all of you.

I cannot thank you enough.Looking forward to re-joining society with 100% single vision very soon...Slow and steady wins the race :-)My love always,Caroline

Dear Family & Friends,Well, we had a very informative visit at the Shepherd Spinal Center with an amazing man named Dr. Ben Thrower.He is quite brilliant and wonderfully compassionate.He carefully and thoughtfully found the words to tell Chris and I that, I do, officially have Multiple Sclerosis.So at least we know what we are battling...Now it's time to kick some serious MS butt!

Short term plan: 3 days of Intravenous Solu-Medrol, which will hopefully get my vision back on track more quickly and get me feeling lots better in the near future. Shepherd has sent nurses to my apt to run the IV and tomorrow is Day Three! Yippee! SO tired of having this needle stuck in my arm. It just doesn't go with any of my outfits. ;-)

Long term plan: In the next few weeks I start an exciting new drug called Betaseron, which is used to slow down the progression of the disease so I can live as normally and as lesion/disability/pain-free as long as possible (well...not too normally, I mean God knows I don't want to be Normal...how boring!!) :-) They will send another nurse over to teach me and Chris how to give myself injections of this Wonder-Drug, which I will do every other day for the rest of my life, or until they figure out how to make a pill form (can't come soon enough...I detest needles. Doesn't everyone??)

You know, when bad things happen...when you lose someone close to you, or you are in a terrible accident, or a doctor gives you less than stellar news...I think it can be very easy to feel alone. Hearing the news that I have a chronic, degenerative disease of the central nervous system that could very well lead to some serious disabilities...well, frankly, I was ready for this feeling of isolation to strike, and yet it never did. Because YOU PEOPLE just wouldn't allow it!!!

I have never been so touched by the outpouring of love and concern that Chris and I have received over the past 3 weeks. It has been truly Astounding and has more than once brought me to tears (happy, grateful tears!)We cannot thank you enough. Thank you for the encouragement. Thank you for the thoughts and prayers.On the days when we were too tired to ask for help, Thank You for finding ways to help anyway.Thank you for helping us both keep our senses of humor, which we find more important now than ever!

We are so grateful for each and every one of you.From the bottom of our hearts, Thank You.Our love always,Caroline & Chris

Hello everyone,Wanted to keep y'all in the loop and I may have to keep this one short because my eyes are really not cooperating today!!

My wonderful Dad and Stepmom, Sheryl came over Thursday to give us the results of the spinal fluid tests in person. Along with my double vision and the MRI results of my brain my doctors seem to think I have MS (Multiple Sclerosis). We are in the process of lining up a second opinion with a neurologist at the Shepherd Spinal Center who specializes in MS and see if he agrees with that diagnosis as well.

It is hard news to hear, of course, but we are staying positive and anxious to talk to the "MS Guru" at Shepherd. We cannot thank you all enough for the phone calls, the Daily phone calls (you know who you are!! haha) the cards you have sent, the flowers you have sent, and the food you have brought.

All of you and your kind and thoughtful words and acts have made a very dark 2 weeks SO much brighter. :-) I know that no matter what happens, with friends and family like you on our side, we will get through this.

We love you all so very much and will send more info after we meet with the MS Guru!!!

Our love always,Caroline & Chris

PS- I should think people with MS deserve a handicapped sticker, right?? I have always had the Worst luck with parking spots...maybe this is a chance to make up for that?!?!?Haha...you knew that even MS wasn't going to mess up my sense of humor, right? ;-)

Though I have always known I was a bit of a “Drama Queen”…really, this is getting ridiculous. After I swore off medical drama last year, it has somehow managed to find me once again.

Last week I began having double vision (binocular diplopia) which until you have experienced it, is quite unbelievable. There really is TWO of everything. The double vision was quickly accompanied by horrible headaches. A visit to the Opthamologist led to the Neurologist which led to many lab tests and an MRI of my brain. Unfortunately, the MRI came back “abnormal, but inconclusive”. Essentially there are some spots on my brain and no one is exactly sure what they are.

So on Thursday, Chris and I headed to Kennestone Hospital for a spinal tap and a round of neurological tests. As for the spinal tap, we will just say I have officially found something worse than a root canal…and we’ll leave it at that. After the tap I was instructed to lie flat for 24-48 hours afterwards. After 2 days when I should have felt better I could not sit upright or stand without a raging “spinal headache” as they called it. A few phone calls later the verdict was that I was leaking spinal fluid from the lumbar puncture on Thursday. Leave it to me to get whatever possible complications are possible (Drama Queen!!!) So we went to the doctor yesterday where her performed a procedure called a Blood Patch, which is entirely disgusting and involved more needles in my spine. But so far, it seemed to have worked and patched the hole. I still can’t sit upright, but now its because my back is so sore and swollen from too many needles in my spine! Also have to be flat for another couple days so that the hole will stay closed.

We are still waiting on many test results, and as of now have only officially ruled out Glaucoma, Meningitis and Diabetes. It has been over a week and the double vision is still constant (and typing is a real challenge, so please forgive any typos!!) But hopefully the bloodwork and spinal fluid test results will come back soon and we will have more answers. We are trying to stay positive and hoping for good results this week. The waiting and not knowing has been really hard. So please keep us in your thoughts and prayers and I promise to email again when we know more.

We love you all very much and appreciate your prayers, phone calls, visits, etc. more than you know.Our love always,Caroline & Chris